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Subject:
From:
Sally Lopez <[log in to unmask]>
Reply To:
Sally Lopez <[log in to unmask]>
Date:
Sat, 7 Sep 2002 11:40:08 -0400
Content-Type:
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<<Disclaimer: Verify this information before applying it to your situation.>>

I have received a number of responses to my email (in case you missed
it, it is below) regarding forming a coalition between celiac groups in
order to move forward on issuew where there is already consensus and
establishing dialogue where there is not consensus among the various
organizations.

All the responses I received were in supporting such a coalitiion.
Seems to me it is pretty simple--we can be ignored as long as were are
in-fighting!  There is strength in numbers.  When we can't be divided,
we become stronger.  Think of all the progress that has happened since
the celiac group began (we are eternally grateful for this group!).
Since I was diagnosed, there are many more foods that are gf, better
communication about which foods are/are not gf, sharing of recipes and
restaurants, sharing of testing proceedures, sharing of management of
issues such as coexistance of other conditions, etc.

Below is my original emai:

Sally

> <<Disclaimer: Verify this information before
> applying it to your situation.>>
>
> I'd like to throw in my two cents on this one.
> I think that Tom
> Sullivan's email was well thought out.  It
> raised some interesting
> questions that would have to be resolved before
> there could be "one
> voice".
>
> Then, if there were "one voice" and new issues
> arose in contention or
> old issues resurfaced, there would be more lost
> than gained as it would
> only seek to polarize people and
> groups--perhaps even further apart than
> they are now.
>
> Why not a coalition of the various groups so
> that there is  "one
> voice"on issues that where there is already
> consensus or where sheer
> numbers would raise attention to our cause.
> For example, regarding the
> need for research, are we not of "one voice"?
> Regarding the need for
> better food labeling, are we not of "one
> voice"?  Regarding exchange of
> information about such things as gf foods,
> insurance issues, are we not
> of "one voice"?  There is agreements regarding
> the need--just not the
> details.  If each group would be willing to
> appoint someone to represent
>
> their group within the coalition, wouldn't it
> be a beginning?  Couldn't
> each organization fund one person to join?
>
> If there is such a coalition, I guess I'm in
> the dark about it.  Then
> perhaps the existing coalition could step in
> here and explain their
> purpose and what issues there are/are not
> consensus.
>
> If there is no such coalition, isn't it a
> beginning?   As long as all
> the groups are in conflict with each other,
> the message just ain't
> gonna get out there.  This is bad for the
> organizations, and worse for
> the individuals with celiac.
>
> What needs to happen is to move forward as "one
> voice" on the issues
> where there is consensus at this time.  What
> needs to happen next is to
> prioritize other issues on which dialog within
> the organizations has not
> yet reached consensus and then get on with
> agreeing to disagree on the
> fine points, but moving forward on that which
> is agreed.
>
> If we don't get moving on this, other research
> on other diseases will be
> funded, but not celiac.  If we don't explain
> the type of food labeling
> that we need, it won't happen.  If we don't
> start dialog on other issues
> such as those mentioned in Tom's letter, we'll
> never get our disease the
> attention needed to find a cure or help us to
> manage our diets better
> until there is a cure!
>
> Thank you.
>
> Sally

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